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Bourkel, E., Ferring, D., & Weber, G. (2012): Perceived rights of and social distance to people with Alzheimer’s disease. GeroPsych - The Journal of Gerontopsychology and Geriatric Psychiatry, 25(1), 25-32. Doi: 10.1024/1662-9647/a000052 AUTHOR POSTPRINT This article may not exactly replicate the final version published in GeroPsych. It is not the version of record and is therefore not suitable for citation. Perceived Rights of and Social Distance to People with Alzheimer’s Disease Elisabeth Bourkel 1 , Dieter Ferring 1 & Germain Weber 2 1 University of Luxembourg 2 University of Vienna, Faculty of Psychology Key words: Alzheimer’s disease, perceived rights, social distance, stigmatization, health professionals, laypeople Correspondence concerning the paper should be addressed to Dieter Ferring, University of Luxembourg Campus Walferdange – Bâtiment XII University of Luxembourg Route de Diekirch LU-7220 Walferdange Email: [email protected] Abstract The present study investigated how laypeople and professionals (N = 185) judge the rights of a person affected with Alzheimer’s disease (AD) and whether social distance exists towards this person. Participants completed a questionnaire after reading a vignette describing a target person with an early stage of AD. Half of the participants responded to a female target, the other half responded to a male target. Results showed that rights and competencies of the persons are rated high and social distance is exhibited only to a lesser degree, although there was a significant difference between the male and female target. Furthermore, health professionals approved more rights than laypeople, which suggests that there is a need for more detailed information about this disease in the general population.

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Page 1: Bourkel, E., Ferring, D., & Weber, G. (2012): Perceived …...If competency levels are judged as low, relatives and/or care workers often make decisions on behalf of the concerned

Bourkel, E., Ferring, D., & Weber, G. (2012): Perceived rights of and social distance to people with Alzheimer’s disease. GeroPsych - The Journal of Gerontopsychology and Geriatric Psychiatry, 25(1), 25-32. Doi: 10.1024/1662-9647/a000052 AUTHOR POSTPRINT This article may not exactly replicate the final version published in GeroPsych. It is not the version of record and is therefore not suitable for citation.

Perceived Rights of and Social Distance to People with Alzheimer’s Disease

Elisabeth Bourkel1, Dieter Ferring1 & Germain Weber2 1University of Luxembourg 2University of Vienna, Faculty of Psychology Key words: Alzheimer’s disease, perceived rights, social distance, stigmatization, health professionals, laypeople Correspondence concerning the paper should be addressed to Dieter Ferring, University of Luxembourg Campus Walferdange – Bâtiment XII University of Luxembourg Route de Diekirch LU-7220 Walferdange Email: [email protected]

Abstract The present study investigated how laypeople and professionals (N = 185) judge the rights of a person affected with Alzheimer’s disease (AD) and whether social distance exists towards this person. Participants completed a questionnaire after reading a vignette describing a target person with an early stage of AD. Half of the participants responded to a female target, the other half responded to a male target. Results showed that rights and competencies of the persons are rated high and social distance is exhibited only to a lesser degree, although there was a significant difference between the male and female target. Furthermore, health professionals approved more rights than laypeople, which suggests that there is a need for more detailed information about this disease in the general population.

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RIGHTS AND SOCIAL DISTANCE OF PEOPLE WITH AD 1

Perceived Rights of and Social Distance to People with

Alzheimer’s Disease

Perception of people with Alzheimer’s disease (AD) is currently a crucial issue, as a

substantial number of people worldwide suffer from this neurodegenerative disease. In 2008,

there were approximately 30 million people with dementia in the world (Alzheimer’s Disease

International, 2008). More and more people succumb to the disease because of longer life

expectancy (Ferri et al, 2005). With respect to the specificities of AD it is particularly difficult to

ascertain for people in an early or intermediate stage of dementia if they can live independently

and stay autonomous without endangering themselves or others. Furthermore, it is not clear in

how far deficits or competencies, respectively, are limited to certain activities or domains of

functioning (Marson, 2001). For instance, psychological tests may assess the general cognitive

performance of a person, but this does not allow a judgment concerning the general level of

competence in everyday life and changes in personality characteristics related to the dementia

process (Moye, Karel, Azar, & Gurrera, 2004; Moye & Marson, 2007).

If competency levels are judged as low, relatives and/or care workers often make

decisions on behalf of the concerned person (e.g., with respect to health care, leisure time

activities, etc.) even if there is no “objective” information about the specific competencies of this

person. Moreover, most formal and family caregivers do not seem to question if they have the

legal right to make such a decision (Moye & Marson, 2007). Specific frameworks that regulate

the taking over of legal responsibility by a third person exist in most European countries in order

to avoid harm to the concerned person and his or her environment. Those legal directives mostly

deal with the regulation of finances and legal capacity, but do not cover issues of lifestyle and

autonomous living.

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RIGHTS AND SOCIAL DISTANCE OF PEOPLE WITH AD 2

It remains an open question if caregivers have ideas about the rights that should be

assigned to persons at different stages of dementia. This question will be addressed within the

present study.

Competencies, Rights, and Stigmatization

Only a few studies exist which analyze the participation of persons with dementia in

health decisions. These show that the majority of family caregivers involve persons with

dementia in decisions regarding health issues (Hirschman, Joyce, James, Xie, & Karlawish, 2005;

Hirschman, Xie, Feudtner, & Karlawish, 2004; Karlawish, Casarett, Klocinski, & Sankar, 2001).

The probability of a patient to participate in decisions is higher if the illness is in an early stage,

the caring person is female, or if caregiver and patient are married; the impact of these factors

decreases though with disease progression (Hirschman, Joyce, James, Xie, Casarett, &

Karlawish, 2005).

Werner (2006) instructed laypeople to judge five competencies of a person with mild or

severe AD depicted in a vignette. The competencies comprised the following activities with

differing impact for the personal security of his or her environment: “drive a car”, “make

financial decisions”, “make health decisions”, “choosing one’s clothes”, and “prepare a cup of

tea”. The author summed up the ratings resulting for both questionnaire versions, and she showed

that the majority of participants indicated that the person would no longer be able to “drive a

car”, “make financial decisions”, or “prepare a cup of tea”. Most respondents estimated, however,

that the person was still able to make a decision regarding health and choosing his or her own

clothing. Preparing a cup of tea is probably considered to be more dangerous than making

medical decisions as there could be an immediate negative outcome linked to it (e.g., a fire). The

findings indicate that competencies involving a threat to the security of the person and his or her

environment were rated lower than activities that do not have a direct impact on security. The

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RIGHTS AND SOCIAL DISTANCE OF PEOPLE WITH AD 3

author confirmed these results in a second study in which she interviewed general practitioners

(Werner, 2007).

When analyzing judgments about the rights of persons with dementia, “stigmatization” is

also involved. According to the World Psychiatric Association and World Health Association

(Graham et al., 2003) elderly people with cognitive impairment bear a double risk to be

stigmatized due to their age and their disease. Findings of a survey conducted by De Mendonça

Lima, Levav, Jacobsson, and Rutz (2003) illustrate this: The authors report that stigmatization of

individuals suffering from dementia exists both in health care and in the general public. Here, we

will focus on social distance which represents one of the three components of stigmatization

besides prejudice and stereotyping. The wish for social distance towards a certain person means

that one does not want to interact with him or her (Corrigan, Markowitz, Watson, Rowan, &

Kubiak, 2003), and social distance thus represents a specific and often used indicator of

discrimination (Angermeyer, Beck, & Matschinger, 2003; Angermeyer & Matschinger, 2005;

Corrigan, Backs Edwards, Green, Lickey Diwan, & Penn, 2001; Corrigan et al., 2003; Link,

Phelan, Bresnahan, Stueve, & Pescosolido, 1999; Werner, 2005, 2006). Moreover, social distance

differs depending on the perceived competence of the person affected with dementia (Werner,

2006); differing profiles of distancing may thus be expected for different stages of the disease if

these are associated with differing evaluations of the person’s competence. Besides disease

progression, gender and familiarity with AD, which are analyzed in this study, represent further

variables that may exert an influence on perceived competency and social distancing as indicators

of stigmatization.

Gender

The double standard of aging (Krings & Kluge, 2008) holds that women compared to

men are perceived to age earlier; therefore, they should receive the negative evaluation associated

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RIGHTS AND SOCIAL DISTANCE OF PEOPLE WITH AD 4

with age earlier as well. According to this, women affected with AD should bear a triple risk of

stigmatization, due to their age, due to the disease, and due to gender. Furthermore, there are

social stereotypes associated with differing competence profiles of men and women: While men

are considered to have higher intellectual competency and autonomy (Canetto, Kaminski, &

Felicio, 1995), and trigger more anger (Wadley & Haley, 2001), elderly women are attributed

higher nurturance and warmth, but are rated lower in general competency than men (Canetto et

al., 1995; Fiske, Cuddy, Glick, & Xu, 2002). As a last point, one may mention that the

respondent’s gender may also exert an influence on the perception of a person with AD. Werner

and Davidson (2004), for instance, demonstrated that men express more feelings of rejection

towards a person with AD than women; a finding that may reflect differing attitudes and thus

differing evaluation criteria of men and women.

Familiarity with Mental Illness and AD

Regarding perceived competency of persons with AD, Werner (2007) demonstrated an

impact of familiarity: General practitioners who had more professional experience with people

having cognitive deficits judged the same person with AD as more competent than less

experienced practitioners.

The impact of familiarity with the disease on social distance towards a person with AD

has to our knowledge not yet been analyzed; studies situated within the context of mental

disorders, however, showed that familiarity with mental disorders reduces discrimination and

prejudices towards persons affected with one of these disorders (Angermeyer & Matschinger,

2005; Corrigan et al., 2003). This result could indicate as well that familiarity with AD may

decrease social distancing towards a person with this disease.

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RIGHTS AND SOCIAL DISTANCE OF PEOPLE WITH AD 5

Goals of the Present Study

Besides a descriptive analysis of perceived competency and social distancing towards

persons with AD, the current study will investigate the correlation of gender and familiarity with

these variables.

Analyses of gender effects

Based on prior findings, we expect that women affected with AD will receive lower

ratings of competency than men. Concerning social distance, two different associations are

possible. On one hand and due to gender stereotypes, elderly women with AD could be more

stigmatized – in terms of distancing - than men with AD. On the other hand and referring to the

findings of Wadley and Haley (2001) on men with AD triggering more negative feelings, one

could also expect a bigger wish for distancing from this group. A third gender hypothesis holds

that there is a difference in how women and men perceive persons with AD. Based upon previous

findings it is expected that male respondents may show more negative feelings towards persons

with AD, that is, assign fewer competencies and show a greater distancing than women (Werner

& Davidson, 2004).

Analysis of familiarity effects

With respect to familiarity, we hypothesize that persons having specific familiarity will

assign more rights and show less social distance towards people with AD compared to people

who are not familiar with this group. In order to test this hypothesis, we will compare the

judgments of health professionals working with people having AD and laypersons.

Design and Methods

Data Collection and Sample Description

Data were collected by a self-assessment questionnaire specifically designed for the

purpose of the present study. A total of 240 questionnaires were distributed to health

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RIGHTS AND SOCIAL DISTANCE OF PEOPLE WITH AD 6

professionals, who successfully completed a “Gerontology Master Program” and “laypeople”,

that is, individuals without any professional contact to persons with AD. We contacted the

laypeople personally and asked them to forward the questionnaires to family and friends. A total

of nearly 50% of the laypersons in the sample stated that they never had personal contact with

individuals having AD. Almost 39% of the laypeople reported that once in a while they

would have personal contact with people with AD, while 11 % stated that they had contact on a

regular basis. The questionnaire contained a vignette with the description of a person in an early

stage of AD whose cue symptoms were derived from the clinical description provided by Stoppe

(2006) as well as Förstl and Calabrese (2001). A person in an early stage of AD was chosen,

because this is a delicate state, where it is difficult to make clear judgments about the

competencies of the person. One version of the vignette describes a man and another version

describes a woman (“Mr. M.” and “Mrs. M.”) of the same age (75 years) and the same

demographic background affected by AD (see Appendix for complete vignette). Altogether 185

questionnaires were completed and returned; this corresponds to a response rate of 66% which is

quite high compared to the average rates for this kind of research (see Rosnow & Rosenthal,

1997). Table 1 depicts the cross tabulation of participants according to (a) their professional

relationship with persons with AD and (b) gender of the patient.

The sample comprised n = 136 females and n = 49 males. Age ranged from 18 to 61 (M

=36.6, SD = 9.35). The following distribution was found for school education: 1.2% primary

school graduation, 3.7% compulsory education, 24.8% apprenticeship, 32.3% high school

diploma, 37.9% college degree.

Questionnaires

Perceived rights of persons affected with AD. Three different charters have been studied to

create items which concern the rights of a person with AD; these comprised (a) Charter of rights

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RIGHTS AND SOCIAL DISTANCE OF PEOPLE WITH AD 7

of people in need of help and care (Bundesministerium für Familie, Senioren, Frauen und

Jugend, 2006), (b) „Charte des droits et libertés de la personne âgée dépendante“ (Fondation

Nationale de Gérontologie, 1997) and (c) „Recommendations on how to improve the legal rights

and protection of adults with incapacity due to dementia“ (Alzheimer Europe, 2001). The final

questionnaire contained k = 25 items concerning autonomy, privacy, information, health care,

decision making, and daily activities. One half of this item pool was negatively formulated and

the other half positively; items were put in a random order. The respondents were instructed to

rate the items on a 5-point Likert scale, with a possible neutral answer, ranging from “absolutely

wrong” to “absolutely true”.

Principal axis analysis showed that a factorial structure differing between five domains of

perceived rights fitted the data best (Table 2). The five factors comprised “right of privacy and

information”, “right of autonomous living”, “human and citizen rights”, “right of self-

determination and self-responsibility”, and “decision making by significant others”. Internal

consistencies of the scales proved to be low but still acceptable for the intended group

comparisons (see Nunnally & Bernstein, 1994).

Social distance. The Social Distance scale comprised eight items partly based on the

Bogardus-Scale (Bogardus, 1933). These items described the willingness to live near the person

depicted in the vignette, to spend an evening socializing with him/her, to make friends with

him/her, and to accept the marriage of one’s child to the person’s child. Two additional indicators

of social distancing addressed the willingness to support the person (Weiner, Perry, &

Magnusson, 1988) as well as the question of where one would ask the person for a favor. The

respondents were instructed to rate the items on a verbal 5-point Likert-scale ranging from

“definitely willing” to “definitely unwilling” with a possible neutral answer. The principal axis

analysis showed that items belonged to one factor showing satisfactory reliability (α = .80).

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RIGHTS AND SOCIAL DISTANCE OF PEOPLE WITH AD 8

Data Analysis

A MANOVA with repeated measurement across the five factor-analytically derived

“rights” was calculated to identify possible differences between the scales. Six (2 x 2)

multivariate analyses of variance (MANOVAs) were conducted to analyze the “effects” of the

independent variables version of questionnaire and gender, respectively, version of questionnaire

and relationship to people having AD on perceived rights. Subsequently, a follow-up analysis

with separate univariate ANOVAs was performed. Further two-way ANOVAS were conducted

to analyze the effects of the independent variables on social distance.

Results

Perceived Rights of Persons with AD

Descriptive results at the item and score level. At the item-level, the item with the

lowest score was “Mrs. /Mr. M. should not be allowed to drive a car”; a total of 80% were in

favor (i.e., responding “true“ and “absolutely true“), only 1.6% of the respondents were against

this item. The second lowest rating concerned the management of finances; 52.5% did not

approve this right, while 40.5% indicated that Mrs. /Mr. M. should not be made culpable for their

acts in court. Nearly all the respondents agreed with the following rights: Care workers should

not read the mail of Mr. or Mrs. M. without her or his consent (93.5% agreed). Nearly the same

number of people thought that everyone should knock on the door before entering Mrs. /Mr. M.’s

room.

A MANOVA with repeated measurement across the five factor-analytically derived scales

showed that the agreement to the specific rights did significantly differ, F (4, 171) = 89.12, p =

.00. Post-hoc comparisons by dependent sample t-tests with Bonferroni adjustment to reduce

Type I error showed that there were significant differences between each of the scales, with the

exception of “human and citizen rights” and “decision making by significant others”. The scale

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RIGHTS AND SOCIAL DISTANCE OF PEOPLE WITH AD 9

with the highest approval was “rights of privacy and information” (M = 4.35, SD = .51), followed

by “rights of autonomous living” (M = 4.02, SD = .76) and “rights of self-determination and self-

responsibility” (M = 3.84, SD = .66); “human and citizen rights” (M = 3.56, SD = .61) and

“decision making by significant others” (M = 3.42, SD = .94) received the lowest approval (see

Figure 1).

Test of gender effects. A MANOVA revealed that there were no significant effects of the

target person’s gender, F (5, 167) = 1.08, p > .05, the respondent’s gender, F (5, 167) = 2.21, p >

.05, and their interaction, F (5, 167) = 1.24, p > .05, on perceived rights. Thus, it made no

difference if a male or a female respondent had to evaluate a woman or a man affected with AD.

Test of familiarity effects. The results of a further MANOVA showed that there were

significant effects of familiarity on perceived rights, F (5, 167) = 11.51, p = .00. With the

exception of “citizen rights”, professionals scored higher on all perceived rights than laypersons.

Separate univariate ANOVAs using Bonferroni adjustment revealed a significant effect of

familiarity on “right of privacy and information”, F (1, 171) = 16.53, p =.00, “right of

autonomous living”, F (1, 171) = 36.67, p = .00 and “right of self-determination and self-

responsibility”, F (1, 171) = 10.62, p = .001. The interaction between target person’s gender and

familiarity on perceived rights did not reach statistical significance, F (1, 167) = 1.51, p >.05

There was a significant interaction between familiarity and respondent’s gender on “right

of self-determination and self-responsibility”, F (1, 175) = 4.95, p = .027. While female

laypersons and professionals did not differ concerning this right, male laypersons showed

significantly less agreement for this right than male professionals (see Figure 2).

Social Distance

Descriptive results. The means and standard deviations for the indicators of social

distance are listed in Table 3, with higher values indicating higher distancing. “High distance”

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RIGHTS AND SOCIAL DISTANCE OF PEOPLE WITH AD 10

includes “rather unwilling” and “definitely unwilling”, while “low distance” contains “rather

willing” and “definitely willing”. Respondents indicated the lowest social distance regarding the

willingness to accept the marriage of one’s child to the patient’s child. The highest response was

found for the question of whether one would ask the patient for a favor. All other items ranged

about the response categories “low distance” and “neutral”.

Test of gender effects. A two-way ANOVA revealed a significant effect of the variable

“target person’s gender” on the scale “social distance”, F (1, 178) = 5.37, p = 0.21. Respondents

showed lower distancing with respect to the woman (M = 1.99, SD =. 65) compared to the man

with AD (M = 2.20, SD = .61). Respondent’s gender had no effect on social distancing, F (1,

178) = .401, p > .05, the interaction between respondent’s and target person’s gender on social

distancing did not reach statistical significance either, F (1, 178) = .65, p > .05.

Test of familiarity effects. The results of the second ANOVA showed that there was a

significant effect of familiarity on social distancing, F (1, 178) = 3.90, p = .05. Respondents with

professional background scored lower on social distancing (M = 2.00, SD = .62) than laypersons

(M = 2.21, SD = .66). The interaction between (a) familiarity and target’s gender F (1, 178) =

.86, p >.05 as well as (b) familiarity and person’s gender were not significant, F (1, 178) = .37, p

> .05

Discussion

The most outstanding finding of this study certainly is that respondents agreed to a

comparatively high degree with the rights that should be attributed to persons in an early stage of

AD. At the item level, respondents showed less agreement for those rights that involve a potential

threat for the person and his or her environment. This relates to findings described by Werner

(2006) who also reported in a similarly designed study (i.e., use of vignette technique) that rights

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RIGHTS AND SOCIAL DISTANCE OF PEOPLE WITH AD 11

relating to security, for example, “driving a car”, were rated lower than rights which had no

relation to security, for example, “choosing one’s clothes”.

If one holds that the attribution of rights also reflects an estimate of personal

competencies necessary to conduct or exert these rights, the findings indicate as well that

competence is rated comparatively high. When looking at the five factor-analytically derived

scales, a differential profile emerged indicating that respondents significantly differed between

the specific rights described here. The “right for privacy and information” about ongoing medical

procedures was rated highest, followed by the “rights indicating an autonomous living”.

Agreement to “rights concerning self-determination and responsibility” was high though less

pronounced than the other already mentioned scales. This scale comprises the management of

finances by the person, explanation of medical diagnoses and treatments including the discussion

of possible risks and alternatives with the concerned person, as well as making the decision about

parenteral nutrition. Interestingly, male laypersons showed less agreement here and differed from

female respondents belonging to this group as well as female and male professionals. It may be

that the specific contents such as managing finances and the discussion of alternative treatments

could have induced this specific finding, and this should be validated in further studies.

Finally, “human and citizen rights” showed less agreement than the scales above though

the scale mean still indicated general approval. The scale describing the “overtaking of decisions

by significant others” found the least approval in the sample. Summing up, the majority of

respondents agreed to the rights of privacy, autonomy, and self-determination as described by the

first three scales. Human and citizen rights did not find such a high rate of approval although they

were still higher than the overtaking of decisions as described in the last scale. Agreement to and

thus attribution of rights was not affected by the target person’s or the respondent’s gender (with

the one exception described above).

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RIGHTS AND SOCIAL DISTANCE OF PEOPLE WITH AD 12

Familiarity, however, significantly correlated with all but one scale: Persons with a

professional background accorded more rights to the person affected with dementia than

laypersons. There was no difference between the two groups with respect to “human and citizen

rights”. These findings fit into existing research, and they confirm that the availability of

information about a given disease – covered here by professional experience - may result in more

elaborate representations and attitudes and thus differing judgments. This is in line with the

contact hypothesis already proposed by Allport (1954) who claimed that contact between groups

can reduce stereotyping and prejudice under certain conditions. With respect to the perception of

persons with AD, little information may be dangerous because this will go along with the

stereotyped reduction of rights and underlying competencies. The consequence of such a finding

is evident: The general population needs to become better informed about AD, as more and more

people come into contact with people with AD (Bickel, 2008). Further, these findings support the

call for community based living in small groups for people with long-term disabilities, including

people with AD, as expressed in the UN Convention on the Rights of People with Disabilities

(UN, 2006), assuring an increase in typical social contacts and interactions with the “general”

population, and, thus, contributing to the familiarity related to persons with AD.

Social distancing was not very pronounced in this study as the descriptive analysis

showed: The majority of respondents (78% < n < 87%) indicated that they would live near the

person, that they would spend an evening socializing with her/him, and that they would not mind

their child marrying the person’s child. Far more than half of the sample stated they would

support the person (68%) or make friends with her/him (61.9%). Asking for a favor –

interestingly – found less positive resonance s because only 34% would do this. One cannot

exclude if and in how far social desirability has influenced the responses here because it may

seem difficult to overtly state distance from a person who is not to blame for his or her condition

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RIGHTS AND SOCIAL DISTANCE OF PEOPLE WITH AD 13

(see Weiner, Perry, & Magnusson, 1988). Discriminant validity of the social distance indicators

is, however, described by group differences between laypersons and professionals with the latter

showing less distancing. This also validates the group differences already described above for

perceived rights. Professional contact and, associated with this, knowledge about the behavior of

persons affected with AD in an early stage – as it has been depicted here –may prevent social

distancing. The consequences of this finding are evident: Lay people should be informed about

Alzheimer’s disease and this even more so because the disease represents a “weakly scripted”

phenomenon, to borrow a term from cognitive psychology.

Differentiated scripts for this disease may not be elaborated at the layperson level because

the causes for AD are still not known and a remedy or a treatment that decelerates disease

progression does not yet exist. Moreover, AD can happen to anyone and academics, actors,

writers, presidents succumb to the disease. This may lead to "subjective theories" about the

disease that still have to be investigated in their consequences for individual behavior towards

persons affected with AD. Here is one of the directions of further psychogerontological research.

There are some methodological limitations of the study which should be noted. Although

the samples were controlled for gender and – as far as possible – for age, ethnicity and

educational background were not considered. Another possible limitation might be that the

respondents answered the questions in a "theoretical" way. A real encounter with a person with

AD might elicit more emotions; however, the vignette method is often used in research regarding

persons with disorders in mental health (e.g., Werner & Davidson, 2004) and allows researchers

at least to estimate the potential reactions towards a person with AD.

In line with this and as a final point we like to underline that this study addressed attitudes

and social representations but not actual behavior towards patients affected with AD. Because the

link between attitudes and behavior is not necessarily clear-cut, future research should also focus

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RIGHTS AND SOCIAL DISTANCE OF PEOPLE WITH AD 14

on research strategies that allow for the unbiased assessment of “manifest” behavior towards

patient affected with AD and set this into relation to attitudes and representations.

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RIGHTS AND SOCIAL DISTANCE OF PEOPLE WITH AD 15

References

Allport, G. W. (1954). The nature of prejudice. Cambridge, MA: Perseus Books

Alzheimer’s Disease International (2008). The prevalence of dementia worldwide. Retrieved

February 3, 2012 from http://www.alz.co.uk/adi/pdf/prevalence.pdf

Alzheimer Europe (2001). Recommendations on how to improve the legal rights and protection

of adults with incapacity due to dementia. Retrieved from http://www.alzheimer-

europe.org.

Angermeyer, M., Beck, M., & Matschinger, H. (2003). Determinants of the public’s preference

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RIGHTS AND SOCIAL DISTANCE OF PEOPLE WITH AD 20

Appendix

Vignette Used in the Questionnaire (version “Mr. M.”)

Mr. M. is 75 years old and is a widower since 7 years. Since the last few years, Mr. M. has

suffered from heavy forgetfulness and concentration difficulties, so he went to the doctor on

request of his daughter. The doctor carried out different tests and analyses with him and

diagnosed him with Alzheimer’s dementia. Although his family declares that Mr. M. is still able

to live at his home and is able to take care of himself on his own, he lives in a home for the aged.

Meanwhile, his forgetfulness worsened and he has problems with learning new content; however

old memory contents are barely affected. He has difficulties with organizing activities and daily

tasks; it is also noticeable that he has strong calculating problems. Although on first impressions,

Mr. M. may not seem to have communication difficulties, his language is faltering and less

precise than in the past. He often feels overstrained, he is irritable and seems depressive and

anxious; but he does not have physical complaints.

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RIGHTS AND SOCIAL DISTANCE OF PEOPLE WITH AD 21

Table 1

Cross Tabulation of Participants According to (a) Familiarity with Persons with AD and (b)

Target Person’s Gender

Familiarity Target Person -Gender Respondent’s gender Total

Female Male

Layperson Male 29 9 38

Female 26 8 34

Professional Male 35 13 48

Female 46 19 65

Total 136 49 185

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RIGHTS AND SOCIAL DISTANCE OF PEOPLE WITH AD 22

Table 2

Factors loadings obtained in principal axis analysis

Right of privacy and information (α = .66, k = 8 items) 1. Even if Mrs./Mr. M. does not like her/his nurse, it is not necessary that another

person is assigned to his/her care. .60

2. The world-view, religious affiliation and practicing of religious activities of Mrs./Mr. M. should be accepted, even if this will complicate her/his care.

.44

3. Every caretaker in the nursing home should be allowed to read her/his letters without their consent.

.44

4. It is not really necessary to knock on the door or ring the bell of Mrs./Mr. M. before entering her/his room

.43

5. The people involved in the caretaking and treatment of Mrs./Mr. M. should make all the decisions for her/him.

.40

6. Mrs. Mr. M. should not drink alcohol. .38 7. The nursing staff does not have to explain to Mrs./Mr. M, for what the medication is

for. .35

8. Mrs./Mr. M. should not have the possibility to inspect her/his medical records. .32 Right of autonomous living (α = .69, k = 4 items)

9. Mrs./Mr. M. should have an autonomous life, even if this includes certain risks .83 10. If Mrs./Mr. M. wants to, she/he may be left on her/his own. .53 11. Mrs./Mr. M. may move freely. .53 12. The caretaking and nursing staff of Mrs./Mr. M. should arrange that her/his daily life

can be organised according to her/his wishes. .37

Human and citizen rights (α = .66, k = 5 items) 13. If Mrs. /Mr. M. has the need for it, she/he should be allowed to have a sexual

relationship. .69

14. Mrs./Mr. M. should be held legally responsible by law. .54 15. Mrs./Mr. M. should decide for her/himself if she/he wishes to donate her/his organs

after death. .49

16. Mrs./Mr. M. may take part in governmental elections, if she/he would like to. .47 17. Mrs. /Mr. M. should not be allowed to drive a car. .39

Right of self-determination and self-responsibility (α = .65, k = 5 items) 18. Mrs./Mr. M.’s physical condition deteriorated. She/he could die if certain measures

are not carried out. Here, Mrs./Mr. M. may decide for her/himself to which extent the treatment should be carried out.

.58

19. Mrs./Mr. M. may write an authorisation wherein it is stated which medical measures should be taken and which person should be assigned later as caretaker.

.53

20. Medical diagnostics and treatments should be explained to Mrs./Mr. M as well as possible risks and alternatives.

.53

21. Mrs./Mr. M. should manage her/his finances herself/himself. .46 22. If artificial nutrition becomes necessary with Mrs./Mr. M, it should also be

implemented against her/his will. .39

Decision making by significant others (α = .69, k = 3 items) 23. The persons involved Mrs./Mr. M.’s care, assistance, and treatment should make all .69

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RIGHTS AND SOCIAL DISTANCE OF PEOPLE WITH AD 23

the decisions for her/him. 24. Mrs./Mr. M. gets the possibility to take part in a treatment where effectiveness and

safety are not scientifically proven yet. Here, the doctor and the family should make the decision if she/he should take part.

.58

25. The family and/or the caretakers of Mrs./Mr. M. should decide where he/she should live.

.54

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RIGHTS AND SOCIAL DISTANCE OF PEOPLE WITH AD 24

Table 3

Means, Standard Deviations, and relative response frequencies of Social Distance indicators.

M SD High Distance Neutral Low

Distance

Social Distance -total score 2.08 .67 / / /

To have their child married to the person’s child

1.59 .74 1.1% 11.9% 87%

To spend an evening socializing with the person

1.82 .81 3.2% 13.6% 83.2%

To live near the person depicted in the vignette

1.84 .77 .5% 21.2% 78.3%

Willingness to support the person 2.10 .89 5.4 26.6 68%

To make friends with the person 2.24 1.00 11.4% 26.6% 61.9%

To ask the person for a favor 2.92 1.13 31.5% 34.8% 33.7%

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RIGHTS AND SOCIAL DISTANCE OF PEOPLE WITH AD

Figure 1. Mean and standard deviations of the five factor-analytical scales on the “perceived

rights”.

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RIGHTS AND SOCIAL DISTANCE OF PEOPLE WITH AD

Figure 2. Interaction effects of familiarity and respondent’s gender on social distancing.